According to recent reports, too many people are keeping their diabetes a secret. Some people may be compelled to hide their condition by the influence of family and friends who believe hiding diabetes will protect them from discrimination at work or relationships. Other people decide for themselves that they don’t want to be singled out as being different. Others find there is more personal freedom in no one knowing. Sadly, many people hide because of losing insurance benefits or coverage. Here, we listen to three different experiences of people with diabetes from the United States, Bangladesh and Bolivia who live with diabetes and hide their condition. It’s a serious topic.
We ask our readers to consider whether isolation is an effective way to manage a serious chronic illness? What needs to change in society for there to be no shame, no guilt and a willingness to discuss the truth about diabetes?
We hope you’ll give this some thought and write your feedback in the comments section.
Anonymous
When were you diagnosed with type 1 diabetes?
I was diagnosed with type 1 diabetes when I was young and studying in college. I was thin and dedicated to sports. I never imagined that diabetes could be a problem. I received the results from the lab just before a trip. I was asked to go back to the lab to confirm the results when I got back. The results of the second analysis were even more alarming and I was hospitalized. I was practically unconscious.
Did you know anything about diabetes before you were diagnosed?
The only thing I “knew” about diabetes was that it was disease that affected elderly or overweight people and that you couldn’t eat sugar. A girl at school had diabetes but all I knew was that she was often absent and had to take her food to class. I thought diabetes would be an obstacle to doing things that are part of a normal routine. I’ve always been a very active and independent person.
Have you heard of some of the stigma associated with having diabetes?
I heard how people with diabetes die of terrible things, and how they can’t do sports. I heard if you’re insulin dependent, your diabetes is very serious, or how someone’s grandfather cured his diabetes with herbs. All these statements are directly related to ignorance. One anecdote I can tell is when my mother, in her eagerness to find a miraculous cure, asked the doctor if she could give me a herbal tea. He answered very politely that she could give me whatever I want but to never stop giving me insulin, as that was the only thing that would keep me alive. This was a turning point. Before that I came across many people with untimely and even cruel comments, which are the result of ignorance. Even doctors did not believe that I had type 1 diabetes or needed insulin because I was thin. One suggested I discontinue insulin and use oral medication instead. Obviously, this did me a lot of harm and I almost went into a coma again.
Have you experienced any discrimination in relation to your diabetes?
Maybe the personality I have has not allowed situations like this to affect me. I get over it and try to teach the person who is doesn’t know about diabetes. A common situation is going to a bar and asking for a juice without sugar or with sweetener, and they put sugar but don’t tell you. When they see a young person who says that they want sweetener, they think it is out of vanity and not out of necessity. They don’t realise the damage that they do to you when they don’t tell you what’s really in food or drink. Not having healthy options in restaurants or family gatherings is disappointing.
Diabetes doesn’t prevent you from doing anything and you have to hide it just because many people don't know what it is about.
When did you decide that it was better to hide your diabetes?
From the beginning, out of fear and other people’s ignorance. People label you and are afraid of what they do not know. Also, because of insurance company policies, a job or choosing a life partner. Not everyone wants to share a life with someone with diabetes as it involves responsibility, being supportive and also represents an expense for the family. I hide because of insurance company premiums that are raised or don’t cover anything that has to do with diabetes. When you take an insurance, you assume that it will cover such situations.
Do your friends, family or others, like your colleagues, know about your diabetes?
They all know. I feel proud, not of having diabetes but of what I have achieved despite having diabetes.
Are you a mother or parent? If so, do your children know about your diabetes?
For me, being a mother is another achievement. One of the myths about diabetes is that they tell you that you will not be able to have children, or that your children will weigh more than 4 kg. In my case, they were very happy pregnancies. My children were less than 4 kg when they were born and I had healed very well.
How does it feel emotionally to hide your diabetes? List the positive and negative aspects.
You feel insecure and unprotected when you have to hide something that you live with every day which is part of your life and does not really change the essence of who you are. Diabetes doesn’t prevent you from doing anything and you have to hide it just because many people don’t know what it is about. I don’t see many positive things about hiding.
What advice would you give to someone newly diagnosed?
To study, read, learn and stay informed, because knowledge is power.
Anonymous
Like most people, I carry a motley assortment of qualities and quirks that identify me and, to a lesser extent, stamp me as unique.
Some are admirable, such as working – and succeeding – as a newspaper reporter in Washington for nearly 30 years, along the way covering the White House, politics, wars and big events. My stories have been finalists for the Pulitzer Prize; they’ve affected elections (in a good way with important, timely information) and in one instance, forced a member of Congress to resign.
Some traits could be seen as dubious, even eccentric. I drive a stick shift. I throw a ball with my right hand but write and eat with my left.
There’s also this: I’m a type one diabetic who’s worked diligently for nearly 60 years to make sure my “invisible” disease stays that way. I tell no one about my “condition.” Not at work. Not at school. Not among friends or anywhere else. Never have, never will. It’s been that way since I was diagnosed at 8 months old.
I’m sure this strikes some as odd. It’s not. And for me, it’s totally rational. In fact, I have always aggressively shielded that information—that small fact of life—from, well, just about everyone.
My wife knows, though I never share by blood glucose results. My two kids know though the extent of their knowledge is that I test my blood glucose and the refrigerator has insulin in the door. We’ve never discussed the particulars. My mother knows, my doctor knows and a few other assorted folks who noticed my pump before I brushed them off. When I was a kid my parents never shared the information either. When I went off to play for the day as a kid in the 1960s, I’d carry a plastic bag with four sugar cubes.
Fewer than 10 people (probably) know both my identity and my condition. I’m not ashamed or embarrassed by being a diabetic (and yes, I’m intentionally using that word.) It’s my concern and mine alone. It’s not difficult or really interesting and I doubt people in my world would find it compelling to know details about things that don’t affect them.
I’ve never faced a problem I couldn’t handle myself. It’s not luck. Nor is it reckless.
Everybody has his own issues and challenges but for me, diabetes has never been a difficult matter. I honestly have never had a single bad day in 60 years. Some days have been better than others, but not one has been awful. Diabetes is never anybody’s first choice, of course, but for me the disease has never been on my list of “bad” things in this world.
But the bigger, more important reason is this: my choice is a central and proven element in the way I’ve managed, lived with, and essentially tamed the disease. I’ve never been admitted to the hospital for a diabetes-related reason. I have slept all night, nearly every night from the start. When I go to bed my one and only meter is downstairs along with all food. I don’t use a CGM.
I’ve never faced a problem I couldn’t handle myself. It’s not luck. Nor is it reckless. Being an “island” forces a discipline and clarity of thought and action that’s translated into an easy life with diabetes. And sure, there are other ways to achieve this so there’s no judgement from me. This works for me.
Here’s another aspect that appeals to me—because I never share details or even acknowledge this side of my life, I don’t have to talk about it.
That’s positive because concealing my diabetes means I never have to worry about stigma since in order to be stigmatized there must be knowledge of the underlying circumstance. I never worry about the “food police” or well-meaning but unwelcome advice because there has never been a time when a connection is made between the advice and me.
I’m convinced it’s also the reason I’ve never faced burnout or asked, “why me?”
Finally, I fully understand that some diabetics will recoil from this idea. That’s fine and understandable. Diabetes is one of the most personalized diseases and we all find our own way. The hope is for a more open and sincere conversation that broadens perspectives.
That’s the hope since the condition of free and open dialogue is one that must never be invisible even when names and identities are.
Tazul Islam
There are nearly 7.6 billion people worldwide. Every single human being has the potential for success and we all, at one point or another, face challenges. One challenge is developing a chronic condition like diabetes. Plato declared Nothing is perfect in this world, and I believe his words. All people have difficulties and diabetes is one challenge in a long list. Not all problems are within a person’s control. For the most part, diabetes is under our control. Many people play hide and seek with themselves and diabetes, with the result that no one but the person with diabetes suffers. It is important we come out of our cocoons and celebrate life, which is very short, and where every moment is precious.
I was diagnosed with type 1 diabetes in 2010 while I was studying at Notre Dame College, one of the most prestigious colleges of Bangladesh. I am an only child and my parents always dreamed I would study and be successful. When my parents found out I had type 1 diabetes, all their dreams crashed, like thunder had fallen upon their heads. They considered me doomed like I should prepare for my last breath. In Bangladesh, people stereotype the characteristics of diabetes. People believe diabetes only develops in obese people or the elderly. It is also believed that people with diabetes cannot enjoy food, will have severe damage in different parts of their body, and will lose their potency as well as sexual power. In fact, most people in Bangladesh consider diabetes an infectious disease and, most importantly, a call of death.
When I was diagnosed, neither I nor my parents had heard of type 1 diabetes. Most of my neighbors actively pushed these false beliefs into my parents’ heads. Sadly, uneducated about diabetes, we believed their ideas. The most dangerous suggestions came from neighbors who said the doctors were unable to cure me, and they suggested that I should take herbal medicines, seek witchcraft medication and hide the condition as much as possible, otherwise no one would marry me.
Believing these myths, my parents shut me in the house and started trying herbal and witchcraft treatments. Though I started my treatment under an endocrinologist, I had to maintain the herbal treatments too. At one stage, I started losing confidence in myself and I didn’t maintain the doctor’s routine perfectly as I was not properly guided. Because of my isolation and lot of bad suggestions, I started losing both my physical and mental strength. Through this period, I somehow completed my studies and got admitted into Dhaka University, known as the Oxford of the East. I sometimes had the dilemma whether I was a normal human being or not. I asked myself, would I have any chance to lead a normal life?
When I was diagnosed, neither I nor my parents had heard of type 1 diabetes. Most of my neighbors actively pushed these false beliefs into my parents’ heads. Sadly, uneducated about diabetes, we believed their ideas.
Everything changed when I came under the guidance of the Changing Diabetes in Children (CDiC) programme. There were many children at the CDiC who were living with diabetes, but they were not upset about it, and their guardians were also taking advice from doctors. I felt a little bit uneasy, but the CDiC’s nurture, education and treatment impressed me. It gave me a new perspective about care and changed my attitude towards diabetes. I desperately wanted to lead a normal life, which I felt had already been lost. I joined a counseling session and told the psychiatrist about all my difficulties, complications and psychological pressure. The counselor’s suggestion made me think about my life again and motivated me to face challenges. As I was a student of English Literature, I remembered a quote from William Shakespeare’s play Julius Caesar, “Cowards die many times before their deaths.”
Let’s come to the point of hiding diabetes. I can manage my diabetes. It is up to me. I have a choice to manage my diabetes well and live a healthy life, so why should I not do that? I am glad to say I learned that diabetes is in no way responsible for impotence or sexual incapability. Yes, there are some critical situations for diabetes like hypoglycemia or hyperglycemia when we need special care, but if our neighbors remain unaware about our diabetes, they can’t help us and that puts one’s life at risk. For all those seemingly well-wishers who come to help us with wrong suggestions about diabetes, they are fully unaware about the condition.
We live in a very strange world. People smoke on the street which is very injurious to health and seems normal to them, but if I take insulin in a public space, people throw their eyes upon me like I am committing some crime. When I try to take my insulin in public places I observe people become very curious about it and may think I am taking illegal drugs. Some people even ask “what did you inject into your body?”
With a smile I usually answer that I am taking insulin, and explain diabetes and its proper management. Most of the time strangers take it positively which often brings some of my listeners to admit they have the condition and then, they stop hiding their diabetes. I think this is the most effective way to raise awareness among society. One little step of disclosure and education can make a radical change and surely will bring a more accepting and welcoming environment for all people with diabetes.
Tazul Islam is a mentor of the IDF Young Leaders in Diabetes programme and lives in Dhaka, Bangladesh.
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